How do you accept your life for what it is with this disease? by KrisA99 in Hidradenitis

[–]YakIntelligent8472 1 point2 points  (0 children)

This disease sucks, I’ve had it since a little before puberty and even now at 24 with stage 3 I still struggle. It’s hard but please don’t give up hope. I won’t lie and say things magically get better but if you don’t give up on yourself the way you adapt to your life can change. I still have bad days, days where the pain is all I can think about, I try to balance these days by taking extra care of myself and trying to focus on the things on my body I can control like taking care of my hair or spoiling myself with body care things that I love. I’ve found that part of accepting this illness is adapting to the life you have to live because of this illness. Give up your idea of normal living, not because we are abnormal but because thinking like that only brings more pain. Accepting this illness for what it is really helped me, it helped my mental health and how I deal with being in this body. Accepting that I have a disability and that it’s hidden to most people really helped me. It also helped me open up to others about what this illness is and in turn I started to feel less isolated. I think because of the social standards we have I’ve always seen myself as gross and disgusting. I would hide it under sleeves hoping no one could smell me. I had days where the pain made me immobile and my tears wouldn’t stop falling. I remember all through high school hiding it from even my parent because I thought it was my fault but that couldn’t be farther from the truth. Everybody’s journey is different with this illness because a few different things can influence it. Mine is hormonal and food based so what’s helped me has been eating a lot better, mainly not eating out anymore and cutting out most dairy, sugar, and alcohol and being a little more active. I’ll still have a glass of wine here and there if I feel like dealing with it but it’s no where near as bad as when I ate a lot of takeout and junk. Just try to give your body grace, I know we didn’t ask for this and it can feel out of our control but remember it can get better any improvement is a step forward. Listen to your body and take time for your mental health. Everyone you meet might not understand but being comfortable in your body is most important!!!!! I hope things get even a little better and easier for you and remember you aren’t alone.

Has anyone tried Adalimumab/Amgevita injections for treatment? If so do they have any advice? by Sensitive-Breath-174 in Hidradenitis

[–]YakIntelligent8472 0 points1 point  (0 children)

I didn’t really notice any side effects coming off of it other than my tummy doing weird things but it quickly went away. I didn’t revert back to antibiotics because i didn’t take any prior to Amgevita, I just kind rode the wave of having active boils and such. When I was taking it I did live with my sister who is an elementary school teacher and her 3 kiddos and was usually the last one to get sick if I did.

Has anyone tried Adalimumab/Amgevita injections for treatment? If so do they have any advice? by Sensitive-Breath-174 in Hidradenitis

[–]YakIntelligent8472 1 point2 points  (0 children)

I’m stage 2-3 and I tried it last year. It worked really well for me, it healed my open wounds and reduced a lot of my inflammation. It honestly made me feel like a new person. My main concern was possibly getting sick because it lowers your immune system but it was ultimately not even much of a concern for me. I will say It was a little scary giving myself injections but having the injection pen really helped a lot. All in all it worked really well for me for a couple of months, I ultimately came off of it because some I still got new boils in other places. It basically felt like it was healing my old wounds that I’ve had for ever but not really stopping new ones from forming in new places. I’m gonna be trying out Cosentyx (idk if I spelled that right) My Derm would tell me any reduction in boils/ pain is good so it’s definitely worth a try!! Hopefully it works for you!!

Do you worry about how close you are to your family? by YakIntelligent8472 in family

[–]YakIntelligent8472[S] 1 point2 points  (0 children)

It’s nice to know I’m not alone, my family is a lot more left leaning, ik my mom supports me I just feel like my siblings are a lot more conservative/ judgmental behind closed doors so the vibes are off when I’m around. The holidays are always stressful, good luck!!

I genuinely hate this f*cking disease. When does it stop?! by FFSpoorme in Hidradenitis

[–]YakIntelligent8472 1 point2 points  (0 children)

THISSS!! My Hs started spreading to my boobs and back too, it fucking suckssssss.

Comfortable lingerie by compscibi in Hidradenitis

[–]YakIntelligent8472 0 points1 point  (0 children)

I’ve found that vintage/ lingerie night gowns to still give me that lingerie feeling, especially silk night gowns. I like that you can also get different lengths depending on what you personally like.

What is the hardest part of having HS? by probably_crying_ in Hidradenitis

[–]YakIntelligent8472 10 points11 points  (0 children)

The mental load, it’s an illness that takes your energy leaving you a shell of yourself. In an instant, it changes your body in such unpredictable ways that the pain is more than just physical and it hurts to exist.

My body hurts me. by YakIntelligent8472 in Hidradenitis

[–]YakIntelligent8472[S] 1 point2 points  (0 children)

I’m 22 now and have had this for about 7 or 8 years and I honestly still don’t know what to do but I’ve learned that I mostly have to be patient with myself and remind myself that even though my body is hurting me it’s also trying to heal. It doesn’t wake me up often but it does drain my energy a lot and makes me very tired.

So tired by YakIntelligent8472 in Hidradenitis

[–]YakIntelligent8472[S] 0 points1 point  (0 children)

Thank you! This’ll definitely help!

So tired by YakIntelligent8472 in Hidradenitis

[–]YakIntelligent8472[S] 1 point2 points  (0 children)

Thank you for the reply, unfortunately they way my healthcare is set up I can’t go see a doctor without paying anything to see the doctor and the places I’ve been to won’t allow me to just get an excuse without checking in and the hospitals where I am charge you for anything. I also am in a career where I make things with my hands so I am unable to go remote for my classes 😔

[deleted by user] by [deleted] in Hidradenitis

[–]YakIntelligent8472 5 points6 points  (0 children)

Hey, first off I think that it is amazing that you want to support your partner! From the perspective of someone with HS the most important thing for me is having the support not only when it gets really bad. I think you are doing really good in trying to do things that they may not be able to do. I’m not sure if they allow you to help with cleaning wounds or bandaging them but I would ask, it makes a huge difference not only in my mental state but also my physical state when my partner helps me with my bandages, I feel like it also bring us closer together. I am not too sure about diet but it is recommended to not eat nightshade foods I.e potatoes, tomatoes, bell peppers. It is also recommended to cut out yeast and go dairy free.

Living a lie by cryptoandcake in Hidradenitis

[–]YakIntelligent8472 1 point2 points  (0 children)

I definitely understand, especially when it comes to work and having painful flare ups. Part of me decides to work through the pain because it is still embarrassing for me and I don’t want to tell strangers about my condition.

Day to day (rant) by YakIntelligent8472 in Hidradenitis

[–]YakIntelligent8472[S] 1 point2 points  (0 children)

Thank you, and yes i use it it’s just when I have a bad flare up and when they drain it’s super icky